The Case of Gabriela Rivera

By Marc Tunzi

As a family physician, it is difficult for
me to read the case of Gabriela
and her family without wishing they were cared for by one
of my colleagues. I don't know if the story would have evolved
differently if a family doctor had been involved, but I'd like
to think so. Not that Family Medicine is God's answer to the
U.S. health care crisis all by itself, but perhaps some of the
breakdown between the Riveras and their medical providers might
have been avoided if their care had involved at least one person
who knew them both as individuals and as a family.

Within the general context of a Puerto Rican family engaging a predominantly Anglo health care system, three themes stand out to me.

Communication between doctor and patient is
not just a matter of sharing information; it is part of treatment.
In fact, one of the foundations of Family Medicine is the use
of the doctor-patient relationship as a therapeutic tool. Family
physicians Moira Stewart, et al., describe six interactive components
of a patient-centered doctor-patient relationship: 1

Exploring both the disease and the illness
experience

Understanding the whole person

Finding common ground regarding management

Incorporating prevention and health promotion

Enhancing the doctor-patient relationship

Being realistic

Unfortunately, it does not appear that much
of the communication with the Riveras was patient-centered,
beginning with Gabriela's diabetes care. "She met once
with a nurse who advised her on diet, exercise, and weight control,
but Gabriela has found it difficult to adapt her traditional
tastes in food and her lifestyle " Once? Are you kidding?
Helping patients face and manage a chronic illness like diabetes
requires patience and perseverance. While some aspects of Gabriela's
situation are culture-specific - such as her diet - many are not.
Motivating patients to get exercise, learn dietary principles,
check their blood sugar with a home glucometer, take their medications
correctly, and take responsibility for their chronic illness
is difficult in all cultures. Nowhere in the presentation of
this case is it suggested that Gabriela's medical providers
explored her illness experience, tried to understand her as
a whole person, sought common ground regarding management, or
tried to implement any of the other components of the patient-centered
clinical method. For example, simply noting, "It's often
difficult to follow to a diabetic diet and to get exercise.
How's it going for you?" might have helped. The sad part
of this is that if Gabriela and her physicians had done a better
job of communicating with each other about her diabetes, and
her sugars had been better controlled years ago, she might never
have developed renal failure and this whole mess might have
been avoided.

Compliance - or, more accurately, noncompliance
(or noncooperation)- is a major issue in medical settings. Doctors
are frequently frustrated by patients who are "noncompliant" - i.e.
patients who do not follow their physician's prescribed course
of action. Noncompliant patients waste our time; they waste
other patients' time; they waste medical resources that could
benefit other patients who do follow directions; they drive
up the cost of health care for everyone. Estimates suggest that
between 10 to 20 percent of all medical appointments are not
kept; 30 percent of prescriptions are not filled; and 50 percent
of patients put on medications for chronic illness fail to take
their medications as prescribed.2While one might think that
physicians who work at public-sector clinics would be especially
compassionate and understanding about the difficulty of following
medical advice, this is not always true. Public sector physicians
frequently work for less money and in more difficult conditions
than their private sector colleagues. Their patients often have
multiple, complex psychosocial and medical problems for which
they receive care at little expense to themselves. Why can't
they just follow directions?

Many of the difficulties with noncompliance
may be addressed with the patient-centered clinical method.
The more that medical providers are able to communicate and
connect with their patients and see things from their patients'
point of view, the more they can work together with their patients
to develop mutually-acceptable action plans. Physicians and
other health care providers frequently have difficulty accepting
the fact that just because someone comes to us for help doesn't
mean that he or she will accept and act on everything we say.
(As an aside, parents, teachers, legislators and others in authority
often have the same problem.) We forget that these other persons
have their own ideas, their own values, and their own plans
in addition to their own set of barriers impeding the acceptance
and implementation of what is recommended to them.

One of the most common reasons for patient noncompliance is
simply not being ready to change. Patients may not fully believe
what they are told because the information doesn't fit with
their previous understanding or experience; they may not have
the cognitive ability to comprehend the information; they may
have the innate cognitive ability but have not yet acquired
the education or language skills to understand the information
that is presented; or they may have underlying behavioral or
psychiatric problems that prevent them from changing. Addressing
noncompliance must start with assessing these barriers to readiness,
acknowledging that family, culture, and upbringing influence
all of them.

Other common primary barriers to compliance
include transportation issues, financial issues, and time issues.
If patients can't get to care, can't afford it, or don't have
time for it, the care won't happen. Sometimes, these are relative
barriers; i.e. they are barriers only insofar as they conflict
with other patient priorities and choices. A family in a rural
area may live 20 minutes from care, have only one car which
is needed by another family member for work, and have no access
to any other means of transportation. For patients on a small
fixed income, even $5 may keep them from doing something of
necessity or of significant value to them. And the time it takes
to get care-perhaps having to go across town on a bus - may keep
them from other personal or family obligations. The point is,
unless these barriers to care are identified, they cannot be
addressed. And whose responsibility is it to discover these
issues? While it is a two-way street, I believe it is the medical
team's responsibility to explore the issues and barriers leading
to noncompliance and to develop mutually-acceptable approaches
to overcome them. Patients may not understand the consequences
or the severity of the problems that noncompliance causes, or
they may simply be too embarrassed or guilty to acknowledge
these barriers on their own.

In the case of Gabriela and her family, there
are several instances of noncompliance: Gabriela's inability
to control her diabetes because she is not ready to follow diet
and exercise instructions and because she cannot afford to take
medication; her reluctance to discuss her headaches, cough,
shortness of breath and insomnia with her physician; and Marcos'
inability to face his own health problems of drinking and diabetes.
Like the communication issues discussed previously, if these
compliance issues had been handled differently earlier in her
care, perhaps Gabriela's problems might not have developed;
or if they had developed, perhaps there would at least be more
trust and better dialogue between the Riveras and the medical
team now. Did anyone actually bother to talk to Gabriela about
her difficulty following the prescribed diet? I have to think
that, given the population of New York City, there is a public-sector
Puerto Rican-savvy dietician or diabetic educator somewhere.
Did Gabriela feel listened to when she went to the clinic so
that she might be more open to presenting new symptoms as they
arose? Was Marcos simply told that he had a drinking problem
he needed to control, or did someone actually talk to him about
his drinking, its effects on his diabetes and his general health,
and about how to handle the relationship between his alcohol
intake and his social life? Did anyone consider having Marcos
meet or speak with other 45-50 year-old Puerto Rican men with
diabetes - God knows there must be plenty of them in New York
who hate needles just as much as he does - so that he knows
he's not alone with this problem? Sure, Gabriela and Marcos
were noncompliant but what a cop-out.

Medical decision-making capacity is the term
used to describe a patient's ability to consent to a treatment
in a specific situation (unlike competence which is a
general legal designation made by the courts). Psychiatrists
Thomas Grisso and Paul Appelbaum3 define capacity as having
four elements:

a patient's ability to understand relevant information about
his/her situation

the ability to appreciate what that information means for
him/her in this situation

the ability to reason with that information

the ability to express a choice about what he or she wants
to happen

Family Medicine educator Jeffrey Spike4 believes
that the ability to reason with information is too subjective
a standard. (Who decides whether a patient's reason is good
enough or not? If a patient simply disagrees with his or her
physician, does that demonstrate a lack of reason?) Instead,
Spike believes this element should be replaced by the ability
to consider information and make a choice that is consistent
with a patient's values and past health care choices.

In Gabriela's case, how do Drs. Johnson and
Parker know that she lacks the capacity to guide her care? Hopefully,
they attempted to speak to her via an interpreter in order to
assess her ability to understand, appreciate, and consider information
and express a choice. Did they use appropriate language with
both Gabriela and her family, avoiding medical jargon and checking
to be sure that the information they provided was understood?
Did they ask questions about her values and her past health
care choices - at least pertaining to her diabetes? Dr. Johnson
"speaks, in English, with Marcos, Maria, and Cecilia. Addressing
all three of them equally. " While it is admirable
to include 15-year-old Cecilia in the conversation given her
close relationship with her grandmother, addressing them equally
assuredly angered Marcos. Most likely, Dr. Johnson believed
that Marcos' "heavily accented English" meant he might
not understand everything. If Marcos didn't trust medical professionals
very much before this, he certainly won't trust them now.

Like compliance, capacity is another area where
communication and patient- and family-centeredness
is critical. Assume for a moment that because of her clinical
condition in the ICU, Gabriela does not have capacity. Dr. Parker
and the nephrologist appear to do a good job of meeting with
Marcos and Maria early (often this kind of information sharing
doesn't happen for days) and discussing what they believe to
be the most important information about her situation. Still,
one wonders what kind of language they used. Did they avoid
medical jargon? Did they check with Marcos and Maria to be sure
they understood what they were being told? Giving information
indiscriminately and giving too much too soon can cause more
harm than good. Why even bother to talk about a kidney transplant
at this point? For that matter, why talk about long-term dialysis
before discussing the possible need for short-term, emergent
dialysis? Up to a day and a half ago, Gabriela led an enjoyable,
productive life; now it appears her doctors want to send her
off to hospice to die.

If Gabriela is unable to participate in her
care decisions -and assuming she doesn't have a Durable Power
of Attorney for Health Care appointing one specific person to
be her health care agent - Marcos, as the son who lives closest
to her and sees her frequently, is the appropriate family spokesperson.
However, Marcos may very well want to speak with his five siblings
about their mother's condition before doing or deciding anything.
In my own experience, Latino families rarely complete advance
directives and rarely rely on just one person to make difficult
decisions, instead preferring a "family consensus"
style of decision-making for critical issues that takes everyone's
views into account. In Gabriela's case, even if Marcos is able
to understand, appreciate, and consider the information given
to him by Dr. Parker and the nephrologist, it is not clear he
has the ability to speak for his family at this point and thus
actually lacks one of the key elements of capacity in this situation.
Did anyone on the health care team consider this issue and suggest
to Marcos the possibility of a more inclusive family meeting - even
if by conference phone call - to talk about Gabriela's condition
and medical decisions?

While there are a number of other issues that
could be discussed in this case - the concept of futility, the
goal(s) of medicine, the Latino concept of respeto, the role
of faith, and the surrogate decision-making standards of "best
interests" versus "substituted judgment" among
them - the three themes of communication, compliance, and capacity
stand out as areas needing attention in Gabriela's care. Leadership
requires mutual trust and respect and a felt connection between
the leader and the person(s) being led to be successful. Medical
leadership is no different. Would a family physician who used
patient-centered, culturally-contextual communication skills
have made a difference in this case? Maybe; maybe not. But I'd
sure like to think so.

MARC TUNZI, M.D., is associate director of the Family Medicine
Residency Program at Natividad Medical Center, Salinas, Calif.,
and is associate clinical professor of family and community
medicine at the University of California, San Francisco, School
of Medicine. After graduating from Santa Clara University, he
received his medical degree from the University of California,
San Diego, School of Medicine and completed a family medicine
residency with the University of California, San Francisco,
Fresno-Central San Joaquin Valley Medical Education Program.
He holds a Certificate in Health Care Ethics from the University
of Washington and has served on the Natividad Medical Center
Bioethics Committee for fifteen years.

The views expressed on this site are the author's. The
Markkula Center for Applied Ethics does not advocate particular positions
but seeks to encourage dialogue on the ethical dimensions of current
issues. The Center welcomes comments
and alternative points of view.